I was also diagnosed in 2012 and has surgery in 2013. I continue on meds and have many health issues still. I haven’t had a full recovery and dramatic weight loss or anything. I’m now starting to regret surgery as it has left me very limited in what I can do. I was far more mobile before. I miss my life. I’ve lost everything since having surgery!

I, too, was diagnosed with a pituitary tumor and subsequently had surgery to remove it. I still struggle day to day with many issues…word finding, comprehension, emotions. I also struggle with finding Cushings disease support groups in our area.

A simple test that measures free cortisol levels in saliva at midnight — called a midnight salivary cortisol test — showed good diagnostic performance for Cushing’s syndrome among a Chinese population, according to a recent study. The test was better than the standard urine free cortisol levels and may be an alternative for people with end-stage kidney disea […]

Your case is every similar to mine. I wasn’t a dancer but I did play multiple sports in high school and played college basketball. I saw doctor Yuen at Swedish as well and many more doctors as well. I have never got my case or my symptoms solved. Over 4 years of doctors and testing. They found I had a pituitary tumor and mildly high cortisol in my 24 hour Ur […]

Thanks for sharing your story. In February it will be 6 years since I’ve had my pituitary surgery. My health is constantly up and down as well. I was just wondering if you’re treated for depression or anxiety at all? Also, have you found any exercises or physical therapy to be helpful?

Jill wrote: 'In December 2004 my dad who had addison's for over 30 years had a triple bypass surgery 6 days before Christmas. The surgery was an amazine success and it was predicted he would be home before Christmas. Day 2 following surgery the hospital neglected to give him his steriods for his Addison's for 22 hours, which they were complete […]

A man with Cushing’s disease — caused by an adrenocorticotrophic hormone (ACTH)-secreting pituitary adenoma — who later developed metastases in the central nervous system without Cushing’s recurrence, was successfully treated over eight years with radiation and chemotherapy, according to a case report.

Meta

The page over at http://cushie-blogger.blogspot.com/ is starting to load pretty slowly and I’m guessing that it’s maybe because of all the blog posts it has to load. So, I’m going to take all the Cushing’s Awareness Challenge Bloggers from 2012-2014 and post them here so I can delete the blog rolls that they’re in now.

Eventually, when I have time, I’ll add the blogs to the general “All Cushie Blogs” list. Hopefully, that will speed the page up! I don’t know if there was a problem last year because I’m sure we had more than 2 of us participating!

I would like to invite you to join us at the Rare Disease Congressional Caucus briefing scheduled for April 2013. The final date is still being discussed but we are looking into two possible dates of either April 16th or April 18th. The meeting will take place in Washington, D.C. and will be attended by members of the Rare Disease Caucus including co-chairs Rep. Joseph Crowley and Rep. Leonard Lance.

As you may know Rare Disease Congressional Caucus is a forum for members of Congress to voice constituent concerns, share ideas, and build support for legislation that will improve the lives of people with rare diseases. The goal of the meeting in April is to educate the members of the Caucus about rare pituitary disorders, including Cushing’s Disease – area that has received little to no recognition among legislators. The meeting will serve as an opportunity to raise legislators’ awareness about multiple issues that patients with rare pituitary diseases, such as Cushing’s disease and Acromegaly, face in their everyday lives.

In preparation for the meeting we drafted a Resolution that addresses some of the key challenges for the patient community including long diagnostic delays, limited treatment options, difficulty finding physicians or treatment centers with expertise in their disease and as a result – a diminished quality of life for patients. Would you be willing to have a look at the draft in the attachment and provide your feedback? Your opinion as a leader of the patient community and expert in Cushing’s disease would be highly appreciated.

I sincerely hope that you will be able to join us at the meeting to share your perspective and talk about the work that you are doing to help patient afflicted by Cushing’s disease live happier and healthier lives.

Please feel free to call or email anytime if you have questions or if you would like to discuss this further. I look forward to hearing back from you soon.

Attached to the email was the House of Congress Resolution. Read it here.

I got back quite quickly and said that I would love to attend. If it was on the 16th, I could go, no problem. If it was the 18th, probably not because I had plane tickets that day to attend the Magic Foundation Conference in Las Vegas.

In late March, I needed to make my final decision on Las Vegas. I had been waffling about that trip for a while since my husband had surprise triple bypass surgery in late January. When I made the decision not to go, he still couldn’t drive or walk the dog – and I was just afraid to leave him alone for 5 days.

As it turned out, the date was a non-issue since the Congressional Caucus would be on the 16th.

April 15 was a terrible day as news of the Boston Marathon came in. Security was stepped up in several cities, including Washington, DC.

I looked online to see if the Caucus would be cancelled and found out that the 16th was Emancipation Day in DC – and the main route that I would take to get there would be closed for a parade.

I was already getting very nervous about the whole thing and not knowing how to get there added to the stress levels.

I had my talk printed out with 3 different places to stop, depending on the time.

When we got to the Rayburn Building, there was a long line of folks waiting to get in. I don’t know if they only open the front door at certain times but when the line started to move, it went fairly quickly. They took 5 at a time through security then we were on our own to find out where to go.

It turned out that our meeting room – 318 – is the room usually used for the Ways and Means Committee. We got there just about 11:30. Robert Knutzen from the Pituitary Network Association was already there as was Alexey from Novartis. Alexey said “Mary?” and I said “Alexey?” and we introduced ourselves. I already knew Bob from several past meetings so the four of us just chatted a bit while others started arriving.

I had brought quite a few Cushing’s brochures with me and had planned to hand them out to people but Julia from the RDLA (Rare Disease Legislative Advocates) showed me a table where I could leave them for folks to take on their own – and quite a few did. If they read them, that’s another story!

Right around noontime, lots of people came in. Some were staffers gathering information to take back to their offices, many others were from rare disease organizations, a few were legislators. It was standing room only and we estimated there were maybe 120-140 people there. Only two were known pituitary patients: Bob with Acromegaly and me with Cushing’s. Bob mentioned the statistic again “1 in 5” so at least 24 others in that room should have had a pituitary tumor…

Representative Leonard Lance (NJ) spoke a bit about the need to recognize rare diseases in this country. He mentioned that there were 7,000 rare diseases and it was important to focus on getting awareness for patients with them. This Caucus focused on the pituitary, although only 2 pituitary diseases were represented.

Vijay Iyengar, Vice President the Rare Disease Franchise of Novartis oncology talked about their two drugs to either cure disease or improve quality of life through a 3-pronged approach:

Targeted research

Open collaboration

Patient inspired solutions

Novartis created the Rare Disease Franchise was recently created as a means of strengthening their involvement and has two drugs with FDA approvals, one for Cushing’s and one for Acromegaly. Their Acromegaly drug is 25 years old and their newest, Signifor, was approved on the anniversary of the discovery of Cushing’s Disease (December 2012) and three new applications are in the approval pipeline.

These diseases are rare because not many people have them and not much knowledge is available about them.

He also said he needs collaborative partners, particularly with Cushing’s. He would like to have Clinical Trial centers. However, usually enough patients are near one or two centers. With Cushing’s, there would need to be 40 or more centers. We talked to Vijay after the Caucus about this and connecting his company with Cushing’s patients.

Emily Acland, although not a Cushing’s patient, summed up some of the symptoms based on her contacts with patients through the Patient Access Network.

Alexey Salamakha, Manager of Rare Disorders for Novartis/Public Affairs and Communications, read some thoughts on the need for disability benefits from Donna of John’s Foundation for Cushing’s Awareness. This included the the fact that veterinarians are more knowledgeable about Cushing’s than endocrinologists. He talked about patient advocacy.

Alexey specifically mentioned me and thanked me for my work.

Bob Knutzen was not diagnosed until the age of 52. He is currently 75. He expressed his desire to have Centers of Excellence for Hormonal Health with the funds coming from NIH’s budget.

Pituitary disease isn’t rare, just the diagnosis. He also pointed out that pituitary patients generally die 10 years early. Without treatment, pituitary patients can’t have children.

If I didn’t know what acromegaly was before this meeting, I wouldn’t have known when I left, either.

Sean O’Neil, Vice President at Novartis made comments about his company and what was being done to help patients.

There are lifetime changes – people may be cured/in remission but they’re never the same

The possibility of a dipstick for cortisol similar to ones diabetics use

Faster diagnosis

My contribution to all this was speed of diagnosis. I told a bit of my story, diagnosing myself in the pre-Internet 1980’s and how today, 26 years later, people are still having issues with diagnosis and wasting on average 6-20 years just getting to surgery. I mentioned that I knew a few people who went for 20 years before getting diagnosed.

After the Caucus was over, there was a lot of discussion, and I talked with several people who had questions about my experiences, Cushing’s Help, what could be done to raise awareness…

Will anything come of it? I don’t know but maybe some folks will start thinking a bit more.

From Tom, on Facebook:

Mary did a great job presenting the Cushings story at the April 16 hearing of the Congressional Caucus on Rare Diseases – Challenges our Country Must Address. Co- chairs Congressman Joe Crowley (D-NY) and Congressman Leonard Lance (R-NJ) both attended and endorsed the good work being done in this effort. Mary spoke with many of the sponsors and others both before and after the hearing discussing her personal experience. Mary has created multiple websites to get the message out on rare diseases especially Cushing’s Syndrome. That effort now extends to more than 40 countries and more than 10,000 participants. We will be doing follow ups with the Congressional Caucus on Rare Diseases and with Novartis, RDLA, EveryLife, Patient Access Network, the Pituitary Network Association and others to build on the gains.

And another email:

Dear Mary,

It was a pleasure to meet you and Tom today. Thank you for attending the Rare Disease Congressional Briefing. I think you did an excellent job by sharing your unique perspective on what a life with Cushing’s disease is like. I want to thank you for supporting our mission and educating general public about pituitary disorders. We at Novartis strongly believe that patient advocacy organizations such as Cushing’s Help and Support and passionate advocates like you are the future and the hope of the Cushing’s community.

As a follow up to our conversation I have reached out to my contacts at NORD and asked if they can help with filing for a 501(c)(3) status. I will keep you posted. Please stay in touch.

Today, April 8th, is Cushing’s Awareness Day. Please wear your Cushing’s ribbons, t-shirts, awareness bracelets or Cushing’s colors (blue and yellow) and hand out Robin’s wonderful Awareness Cards to get a discussion going with anyone who will listen.

And don’t just raise awareness on April 8. Any day is a good day to raise awareness.

What Can *YOU* Do to help?

Check out these ideas

1) status of the Cushing’s Awareness Day legislation… who has signed, who do we need to get? I have contacts to the US congressfolks from Houston, and I wanted to get them to sign if they have not. Can we get someone to testify before Congress? Can we get any federal funding? Can we rally with other rare disease groups to get in front of that mic on CSPAN?

2) can we do a fund drive for the month prior to April 8th in order to fund all of our projects and this site? can we keep track of how much each board member raises with little thermometers that show how much is collected, in order to get people excited about how much money is being generated?

3) can those who have had surgery in the past year right up there story to be published on April 8th for awareness day? I hope that planning this far in advance will allow us to get more articles published. Perhaps those who already had surgery can ask the paper to re-run their story with an update and reminder about awareness day.

4) can someone can write a press release to the news channels to get coverage for awareness day

5) we get someone to create a very nice postcard that we all can print from our home at our expense on card stock. Then we each pay for the postage to send the cards to all of our friends and families. Perhaps we can ask our family and friends to donate money to us that we can then donate to this board…

6) I need a Cushing’s bumper sticker! I know there are some for sale on the store site, but I was wondering if we can get some heads on this project to get something really catchy. I would put one on my card if we could get a really cool design going… any graphic artists wanna take this up?

7) I love the radio blog shows. I think they are so great. Perhaps we can add that icon to all of our Myspace, Facebook, and personal websites. Do we have an icon that we can post to get people to this site?

8) Have people set up care pages to keep friends and family informed about all the tests, doctors appts and then following us through surgery and post op. I have over 65 people subscribing to my care page, and I am confident that those 65 people didn’t know anything about Cushing’s until I told them about it. If we inform little circles of 50 all around the US and world, then we will be doing a great job increasing awareness. It is free, and I love mine. I control the tone of the site, and no one talks back to me there!

9). What can we do in the medical community? I’d like to see us patients doing more to lead the doctors down the proper path. —– Do we get a booth at a national endocrinologist conference and pass out information we want them to know, with Cushies staffing the booth? —– Do we develop a pamphlet specifically for doctors? —– Do we start a partnership with the national association of endocrinologists (not sure if this really exists, but you know what I mean) and work together to get more research done on Cyclic Cushing’s by offering ourselves up as research participants?

10) Perhaps we contact every Women’s health magazine on the market and submit some articles in February for consideration of their April magazine.

11) Perhaps we buy the google ads based on key words that appears in email. The links pop up on the right side bar while people read their gmail or other online email. If the person says ponch, fat, or other key words, then the side bar will give a link to this site.

12) We can distribute DVDs of Kate’s show and the two mystery diagnosis shows (Sam and Sharmyn) to doctors and endos? To new Cushies? This will take some money for DVDs and postage, but if we focus on raising some money, then we can allocated funds to these worthwhile expenses. Now, I am not sure if we need permission from Mystery Diagnosis or Nat Geo for that, but someone can take this project and get all the details.

I’d like to see us set up a goal-driven campaign for Cushing’s Awareness Day. This will really help motivate us into seeing how much interest and good we are generating as a group.

# of newspaper articles submitted
# of newspaper articles publised
# of magazine articles submitted
# of magazine articles published
# of dollars raised
# of dollars allocated to outreach (keyword ads in gmail and others, etc)
# of carepages set up
# of care page followers (in friends and family.. I have 65 already) etc.

If we each decide to lead a project to get all of this taken care of, we could be in a very good position to launch a really big Cushing’s Day Awareness in April. I am really looking forward to seeing all the creativity that exists of the minds of my brilliant Cushie friends!

This year, Novatis has made 2 TV commercials that will air this month to help with Cushing’s Awareness.

View them in advance here:

And

Also, a bit late for Cushing’s Awareness Day this year but a big hope for the future is the upcoming Congressional Caucus on Rare Diseases:

Uh, Oh – I’m already a day late (and a dollar short?)…and I’m not yet sure what today’s topic will be. I seem swamped by everything lately, waking up tired, napping, going to bed tired, starting all over again.

It’s been like this since I was being diagnosed with Cushing’s in the mid-1980’s. You’d think things would be improved in the last 25 years. But, no.

My mind wants things to have improved, so I’ve taken on more challenges, and my DH has provided some for me (see one of my other blogs, MaryOMedical).

Thank goodness, I have only part-time jobs, that I can mostly do from home. I don’t know how anyone post-Cushing’s could manage a full-time job!

I can see this post morphing into the topic “My Dream Day“…

I’d wake up refreshed and really awake at about 7:00AM and take the dog out for a brisk run.

Get home about 8:00AM and start on my website work.

Later in the morning, I’d get some bills paid – and there would be enough money to do so!

After lunch, out with the dog again, then practice the piano some, read a bit, finish up the website work, teach a few piano students, then dinner.

After dinner, check email, out with the dog, maybe handbell or choir practice, a bit of TV, then bed about 10PM

Nothing fancy but NO NAPS. Work would be getting done, time for hobbies, the dog, 3 healthy meals. Just a normal life that so many take for granted.

I would like to invite you to join us at the Rare Disease Congressional Caucus briefing scheduled for April 2013. The final date is still being discussed but we are looking into two possible dates of either April 16th or April 18th. The meeting will take place in Washington, D.C. and will be attended by members of the Rare Disease Caucus including co-chairs Rep. Joseph Crowley and Rep. Leonard Lance.

As you may know Rare Disease Congressional Caucus is a forum for members of Congress to voice constituent concerns, share ideas, and build support for legislation that will improve the lives of people with rare diseases. The goal of the meeting in April is to educate the members of the Caucus about rare pituitary disorders, including Cushing’s Disease – area that has received little to no recognition among legislators. The meeting will serve as an opportunity to raise legislators’ awareness about multiple issues that patients with rare pituitary diseases, such as Cushing’s disease and Acromegaly, face in their everyday lives.

In preparation for the meeting we drafted a Resolution that addresses some of the key challenges for the patient community including long diagnostic delays, limited treatment options, difficulty finding physicians or treatment centers with expertise in their disease and as a result – a diminished quality of life for patients. Would you be willing to have a look at the draft in the attachment and provide your feedback? Your opinion as a leader of the patient community and expert in Cushing’s disease would be highly appreciated.

I sincerely hope that you will be able to join us at the meeting to share your perspective and talk about the work that you are doing to help patient afflicted by Cushing’s disease live happier and healthier lives.

Please feel free to call or email anytime if you have questions or if you would like to discuss this further. I look forward to hearing back from you soon.

Regards,

Even though I’m absolutely terrified of speaking in front of groups (or singles!) I’m going to do this. What a fantastic opportunity to get the word out there for Cushing’s!